We thought alot how as parents we could help nurses and doctors and how our advocasy for Sasha was a part of their work and how they responded to our increasing levels of stress and concern and requests. Always, and especially when surgery does not turn out well, parent's knowledge that they did the best they could with their kid's caregivers is deeply meaningful.
Doctors and nurses have to convey routine and life changing information. We all wait for those words, She/he is fine. I am happy with how she/he responded. And what is said to parents and how it is said stays with them for life.
The mirror image of hospital success stories are those stories with unhappy outcomes. Unhappy outcomes are a challenge in hospitals that celebrate success so publically and as surgeons take on more extreme interventions and preemie support, more infants, babies and toddlers will die later despite the most valiant efforts.
Perhaps the deepening supports for palliative care can now be celebrated and death be more visible beyond immediate families and their informal network of other parents that share updates in elevators and the halls, lounges and cafetarias.
When our baby was rushed out of the room at birth and we later saw them in a warm glass incubator in NICU and when we rushed into the post op waiting room and then CCU after surgery, we carried our hearts in our hands. Actually our hearts were in our care givers hands as they approach with a picture of an organ or a smile to update you.
Parents have intense hope, worry and anticipation of the few words that will change their life. He has a very rare form of ... Such and such numbers are high or low. It is larger than we thought. There is a lot of swelling. She has a fever.How these words are delivered will impact those parents for life, as will the response of the caregivers to parent advocasy. This parent advocasy assists caregivers but sometimes, especially with a medical crash course via the internet, we can pitch a stready stream of questions and requests. We advocated relentlessly for Sasha.
Under very difficult circumstances, with Pamela and I trying to understand each step of Sasha's care and what we could do to help, Sick Kids engaged us in an exemplary fashion with very few exceptions.
The exceptions demonstrate the rule, they offer flashes of recognition that tremendous pressures are being brought to bear on people with different experiences and education and support and happiness in their own life.
Sasha's story is one of heroic personal development in the face of a multi organ bad hand, a long course of risky surgery akin to russian roulette, then a family and caregiver nightmare of cascading surgical complications, lengthy time in CCU, slow recovery on TPN, deepening challenges related to the underlying syndrome, an agonizing dilema over more interventions versus quality of life. You then end with a team that helps you face that heartbreaking realization that it is Enough and all that awaits is a death without pain either at the hospital, a hospice or the relative comfort of home.
Sasha's life demonstrates the commitment of Sick Kids to family centred care and helps us identify the stresses on the human supports as they deal with different parents, some of whose kids will live longer and some of whose kids are dying.
We think it would improve family centred if nurses had more palliative care resources. We also think that the line between living and dying is not so well defined and can be sensitively explored earlier than when the organs are in failure. In short we think family centred care can be improved by expanding the place for death in an institution devoted to life. It sounds contradictory, but then life is just that.
I am a nurse in the CCU. I remember your family's struggle so well. I agree completely with the incorporation of palliation at the beginning of care. Palliation does not mean death, but rather the acceptance of the possibility and always a focus on comfort. As nurses, being with a child and family for 12 hours at a time we share in your frustration and anguish when things do not go by the "plan". Earlier in your blog you said that being in CCU was like being in a warzone- i agree, and unfortunately, family centered care is a victim in that warzone. CCU is a minute to minute number focused place where the wishes of the family are not always in the forefront or even asked for... Please, when you are ready continue your comittment to helping us see how we can make our warzone a little less so for our families
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